Oh Mimi, you poor thing! It's distressing to hear about anyone who is having such a hard time.
Have you tried the pepto Bismul protocol yet? It doesn't sound like the Entocort is good for you.
Have you drastically changed your diet?
Leah
I didn't make it to the bathroom in time.
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Yes, I have tried everything. I just don't have anyone to talk with who understands. Does it ever get better and id my situation the norm for MC? I'm terrified to go to a bbq this weekend with friends. I no longer own white slacks. Thanks for your input.
Diagnosed with MC in 2010. Type 1 Diabetic for many years.
Everyone's case is different Mimi. Some have it much worse then others. I was lucky in the fact hat Entocort worked for me, but I basically only ate proteins, rice, and cooked veggies for 6 months while I healed. It can get better. Many of us here are much better then when we started. Unfortunately, some of us have a much tougher time of it and have other illnesses to deal with at the same time. All i can say is that the healing process takes a very long time... sometimes years.
Did you do the Enterolab testing? What are you eating now?
leah
Did you do the Enterolab testing? What are you eating now?
leah
Mimi,
We understand. We truly, really do.
I had 4 months of constant (24/7) WD. I could NOT leave the house. I ruined one of the cushions on my couch when I fell asleep there and had a horrible, huge BM in my sleep. I lined my bed with plastic and towels and wore a diaper so that I wouldn't run my mattress as well. Then, after the enterolab tests, I cut out all the things to which they said I am sensitive(a lot - you can see my results) I became SO constipated no matter what I did, that I was desperate. I tried every sort of stool softener and routine to get and keep myself going. I also have acute esophagitis that seems to get better, and then worse, much like some people's D does, and causes me acute pain.
It's now a year and a half. No more watery D, and I CAN leave the house. However, I had an accident a few days ago, and have no idea when, not whether, it will happen again. I was sitting at my computer when I FELT IT! 20 feet to my toilet and I didn't make it.
Right now I am having a hard time, but I just adopted a dog, and am working on getting, if not well, at least better. I thought I would never do it because I didn't want to be responsible for another living thing. Then I decided that maybe that living thing would give me something else to think about.
I have been better, and will be again. So will you!
BTW - Licorice farts WAY more than I do, and her breath is disgusting! So she is smellier than I am!
We understand. We truly, really do.
I had 4 months of constant (24/7) WD. I could NOT leave the house. I ruined one of the cushions on my couch when I fell asleep there and had a horrible, huge BM in my sleep. I lined my bed with plastic and towels and wore a diaper so that I wouldn't run my mattress as well. Then, after the enterolab tests, I cut out all the things to which they said I am sensitive(a lot - you can see my results) I became SO constipated no matter what I did, that I was desperate. I tried every sort of stool softener and routine to get and keep myself going. I also have acute esophagitis that seems to get better, and then worse, much like some people's D does, and causes me acute pain.
It's now a year and a half. No more watery D, and I CAN leave the house. However, I had an accident a few days ago, and have no idea when, not whether, it will happen again. I was sitting at my computer when I FELT IT! 20 feet to my toilet and I didn't make it.
Right now I am having a hard time, but I just adopted a dog, and am working on getting, if not well, at least better. I thought I would never do it because I didn't want to be responsible for another living thing. Then I decided that maybe that living thing would give me something else to think about.
I have been better, and will be again. So will you!
BTW - Licorice farts WAY more than I do, and her breath is disgusting! So she is smellier than I am!
Hi Mimi,
Welcome to our internet family. Yep, been there, done that, many times back when I was still reacting. I got my life back by changing my diet, but precious few GI specialists are even aware that diet changes are the key to stopping the inflammation that causes MC, let alone willing to recommend diet changes to treat the disease. That's why we have to pretty much treat ourselves by figuring out our food sensitivities and changing our diet to carefully avoid them.
With diabetes, I'm amazed that your GI doc would recommend Entocort — that's definitely not a good idea.
I also had severe leg and foot cramps and nightmares, and difficulty sleeping. Leg and foot cramps are usually due to a deficiency of either magnesium or potasssium, or both. With the severe diarrhea associated with MC, we tend to have malabsorption problems, and it's very common for people who have MC to be deficient in vitamin D, magnesium, potassium, and sometimes vitamin B-12, usually in that order.
Until you can get your symptoms under control, you might want to give some serious thought to wearing adult diapers (as Lesley mentioned). There are many brands available these days, and they can really help in tough situations, such as nighttime accidents.
You're correct — your doctor is lost. An H. pylori infection is not the cause of your problems, and he would be the only one to benefit from that procedure (because it pays pretty well).
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Yep, been there, done that, many times back when I was still reacting. I got my life back by changing my diet, but precious few GI specialists are even aware that diet changes are the key to stopping the inflammation that causes MC, let alone willing to recommend diet changes to treat the disease. That's why we have to pretty much treat ourselves by figuring out our food sensitivities and changing our diet to carefully avoid them.
With diabetes, I'm amazed that your GI doc would recommend Entocort — that's definitely not a good idea.
I also had severe leg and foot cramps and nightmares, and difficulty sleeping. Leg and foot cramps are usually due to a deficiency of either magnesium or potasssium, or both. With the severe diarrhea associated with MC, we tend to have malabsorption problems, and it's very common for people who have MC to be deficient in vitamin D, magnesium, potassium, and sometimes vitamin B-12, usually in that order.
Until you can get your symptoms under control, you might want to give some serious thought to wearing adult diapers (as Lesley mentioned). There are many brands available these days, and they can really help in tough situations, such as nighttime accidents.
You're correct — your doctor is lost. An H. pylori infection is not the cause of your problems, and he would be the only one to benefit from that procedure (because it pays pretty well).
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.